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About rehh05

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  1. Well, first of all, self diagnosis is tricky at best. It is possible you may have other food sensitivities or allergies or something else is going on with your digestive system. Did you have the celiac panel run before you went gluten free? Did your GI doctor do an endoscopy and take several samples to test? There are lots of things that can cause digestive issues. Also, if you do have celiac, it takes a long time to heal and sometime other seemingly harmless foods cause problems for awhile. Giving up gluten is not a problem or a burden once it becomes clear that gluten is actually poisonous for a celiac's body. But giving it up unnecessarily is tough.
  2. My thoughts, as a non-medical celiac person who has the genes, is talk to your doctor... And don't do anything right now based only on the genetic test. People can have the genetic markers and not develop the disease or symptoms until they are middle aged or more. The genetic test, as I understand it, tells us who might develop celiac not who definitely will.
  3. Well, if I were you, I would go see your doctor and talk to him/her about all this. Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life. About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway. If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results. Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
  4. I agree with the previous posts. Get some reliable info. Also, have you had your thyroid checked? Might be something to think about. Just don't panic, breathe... Keep your blood sugar where it needs to be. Good luck figuring it all out!
  5. Could your child be being exposed at school? Maybe sharing snacks? Or crumbs from someone else's lunch getting into your child's lunch? Exposure from play dough? I teach pre-k and know I have to be super super careful with myself with all the crumbs from the children's wheat based snacks all over the place. And play dough gets into everything once it gets on to a shoe. All it takes for sensitive people to be exposed is for some of those traces left by wheat eaters/users to get onto our hands and then accidentally into us.
  6. That seems kind of backwards to me. Usually they use the biopsy to confirm the blood tests, I think. I know one can test negative on the blood tests and still be positive on the biopsy and have celiac, so ... Hmmm... It will be interesting what they end up saying about you.
  7. Believe me, no preschool teacher wants to deal with D if it can be avoided by something as simple as providing gluten free alternatives... You may need to send in gluten-free bread and crackers for your child, and possibly play dough, but if you are not able to get a 504plan, try working with the school's administration, teachers, assistants, and nurses to educate them and give them solutions. If you send in alternatives and ask staff to make sure your child washes hands frequently and meal tables are wiped down well that should do it... As long as your child doesn't try someone else's snack or taste something they shouldn't. Sometimes just explaining that you know the problem exists and that a formal diagnosis has not yet been obtained still gets cooperation. That's the way it works in the preschool where I teach anyway.
  8. For what it's worth I tested negative on the ttg blood test as I had been gluten free for a long time prior to being tested for celiac. I had the genetic marker test to rule out celiac but those were positive, so we did the biopsy. The biopsy was positive even though I had been gluten free. I am now extremely carefully gluten free and can tell I am healing and am also very sensitive when accidentally contaminated by teensy crumbs. I have since discovered that my great grandfather died of celiac.
  9. I am a teacher in a public school preschool program and I have celiac. Yes, you can ask for a 504 plan. But make sure that you talk to everyone who has anything to do with your daughter. The preschool will be vigilant but will not eliminate wheat products from the school. You will need to politely and pleasantly advocate for her and educate the staff. Finding or creating handout with information on them would be very helpful. Make sure they understand that this is more severe than an allergy in many ways. Sometimes people think they understand this disease but they don't understand about cross contamination or how tiny bits can still cause problems. You are going to need to make sure they understand how important it is for her to wash her hands constantly. And they need to make sure any substitute teachers are informed too. If it is a half day it is easier as there is just snack and other kids hands to contend with, lunch is harder. But it is a rewarding experience. Help the staff question every substance that might accidentally get in her mouth... Paint, playdoh, glue, everything... And both home and school emphasize keeping hands out of mouth and washing things off of hands. I have had kids with extreme allergies in class and celiac and we all worked together without a 504 and things were fine. But if you can get a 504 do it. It is something you can refine in preschool and have ready we she goes to kindergarten and may really need it.
  10. Thank you, Kitty... I had not thought of that difference... I think what I had was stomach flu, but since my reactions are changing now, I was wondering how to tell.
  11. Thank you all! I suspect it was flu, but got to wondering how I would tell.... The only accidental cc episodes I knew about were very minor ones and I got nauseated and then mild pain and D later, but no fever. Since I have not purposely eaten gluten for such a long time, I am not completely clear how my body would react to a bunch of it :-) I think I would rather be comfy and in the dark than really find out by eating something like bread :-)
  12. How do I tell whether I have come down with stomach flu or am suffering the consequences of accidental gluten exposure? Last week, one night, I started vomiting in the middle of the night, and kept it up until everything was out (from 1-7 AM).. then had chills , head ache, and body ache... started with D around 10:30AM and had that until evening until everything was probably gone from there, too... took my temp somewhere in there and was running 100.4. Next morning no nausea, lots of gas, no fever so I went to work. I didn't knowingly eat any gluten, but it is possible that I was cced ... I do not have a gluten free home as I have non-celiac family with me. I may have been exposed to a stomach bug since I work with children... but the whole thing got me thinking... How exactly can I tell the difference between being glutened and catching a stomach bug or for that matter food poisoning? I am fairly new to the whole "be aware of how it feels to be glutened to avoid it next time" thing , so I really want to know :-) My history, if it is important: I have been following a gluten free diet for 5+ years on the advice of a friend who knew I was having tummy troubles. At the time, I was having huge bouts of D with pain and also other stuff. Old doctor had me on lots of IBS meds that helped with the D but made me soooo drowsy. Only in the past year (with a new doctor) have I realized I went for years misdiagnosed. New doctor found and treated Hashimotos and thyroid issues, and then looked at my tummy. Nov 2012 I had the celiac blood tests over my objections since I knew the results would be skewed due to my already being gluten free. In Dec 2012, after that blood test came back negative (can you say "I told you so?"), I had chromosomal testing and an endoscopy. Seems I have one of the chromosomal markers AND villous atrophy... so my new GI guy considers me to have Celiac. He sent me to a dietician... I knew more than she did about cross contamination... now my GI guy tells me he wants another endoscopy 6 months after the first and if there is not healing he is sending me to the celiac center in Chicago. In the meantime, he told me to be very vigilant about being gluten free, not to eat out if I can help it, and to be aware of how it feels to be glutened so I can avoid it in the future... and to figure out if there are other foods that bother me so I can avoid them too...( I am currently thinking corn and dairy)... I do know that I feel best on high fiber, low carbs, little to no corn and dairy, and no gluten.
  13. I would take a proven drug in a heart beat... but I would not participate in a drug test.
  14. interesting abstract, thanks! Fortunately, they did not find any evidence of crohn's in the pathology report. it is interesting to me that his first impressions, based on what he saw during the endoscopy and colonoscopy changed dramatically when my pathology report showed villous atrophy. I am glad that that at least now I can say that a doctor has told me I should follow a gluten-free diet... and he does want to make sure I am doing it well and completely... and he does want to see me in a few weeks after I have had time with the dietician... it just frustrated me a little to feel like I was being pushed off onto the dietician and that he really didn't believe that I have been as careful as I think I am being... and maybe he is right... maybe I am being exposed somehow... I do have the damage in there. I just hope we can figure out how to fix it so everything can heal. I worry about not absorbing vitamins and minerals and medicines properly. But I kinda want to smack him in the head with the blood report I just picked up from his office which says in big all cap pletters that the results of the antigen test would be affected by previous non-gluten diet. ah well... next hoop... I will jump... I just want to figure it all out.
  15. got my test results back today. I have the DQ8 marker... so can't rule out celiac... he didn't really say I have celiac disease, but wants me to go see a registered dietician to follow a gluten free diet... I explained again that I have been gluten free for 4 years and have been very scrupulous (as much as I can be) for 2 years... he told me to humor him, to see the dietician and then come see him in a few weeks. He said if the dietician agrees that I am doing what I need to do, that is great, but I don't think he realizes that I have been sooooo careful. I feel as though my problems have just been handed off to someone else. ah well... at least I am now officially supposed to be gluten free and can tell my family as much